ITHACA, N.Y. –– The first hint that something was off for Emily Dilger, was during a shift at the Downtown Ithaca Children’s Center in the Spring of 2019, where she was working full-time. She had a moment of sheer panic when she stopped being able to breathe.
“I was just laying next to one of the kids and had just put them down for a nap. I was rubbing their back and I couldn’t breathe at all,” Emily said. “I felt like my lungs were being squeezed.”
Almost two months pregnant at this point, she attributed the feeling to the early stages of her pregnancy. She let it go for a week, until something in her heart told her that what she was feeling wasn’t right.
Emily went to the ER where she was given a diagnosis of pneumonia. However, a chest x-ray revealed what Emily called a “shadow.” At the time, doctors thought it was likely just an infection. She was given a breathing treatment and antibiotics and sent home.
But that “shadow” weighed on Emily. A few weeks later, she went to an urgent care facility hoping to find some answers.
“When the doctor finally came in, she was really serious. She had this look on her face that actually scared me,” Emily said. “She had a print out of my x-ray from when I was hospitalized with pneumonia and then the current one. She said whatever this was, is now a lot larger and it’s very concerning.”
The nurse told her she would be speaking with an oncologist — the word alone scared Emily.
“I called my mom and I was in tears. It was probably the scariest feeling I’ve ever felt in my life. Your stomach sinks –– it’s terrible,” she said. “I was Googling, which they tell you not to do. That was making my anxiety a lot worse.”
Unbeknownst to her, a cancerous tumor had formed in her heart and lung.
Emily met with oncologist Dr. Charles Garbo at Cayuga Medical Center, who tried to calm her anxieties by telling her there was a chance that the mass in her chest really was a result of pneumonia but they needed to make sure.
To confirm her diagnosis, Emily was scheduled for a biopsy, during which doctors pierced her chest wall with a long needle to get tissue samples from her lungs. A procedure during which Emily had to remain completely conscious.
That same week, the combination of the biopsy, pregnancy and what she would later find out to be cancer, was enough to land Emily in the ER with crippling pain and an overall unwell feeling.
Still waiting on the biopsy results, Emily got impatient. She wouldn’t be meeting with Dr. Garbo until the week following the biopsy, so, while in the ER, she asked one of the nurses to give her the results sooner.
“Knowing that (Dr. Garbo) was going to tell me what my fate was, I felt like it was way more traumatic than to have the ER nurse just be like ‘yes, you have cancer,’” Emily recalled. “So she goes, ‘yeah I looked at your results and you have Non-Hodgkin’s Lymphoma.’”
Emily was diagnosed with large B-cell Non-Hodgkin’s Lymphoma, an aggressive form of cancer that grows in the lymph nodes and attacks white blood cells, weakening the immune system. Emily was 33, pregnant with her third child.
According to the Medical Director at Cayuga Medical Center’s Oncology Department, Timothy Bael, Emily’s type of cancer requires immediate action.
“That’s the one that needs to be treated most urgently. Once a cancer develops it generally grows and spreads very quickly. It affects mostly the blood system and the lymph nodes but it can go to other places in the body. It responds very, very well to chemotherapy,” Bael said. “Often patients who are pregnant can’t wait to complete pregnancy until they start treatment.”
Bael said that chemotherapy poses some risk during pregnancy because it can cause earlier delivery, and decreased weight at delivery. But because the cancer is so aggressive, it’s worse to not treat it during pregnancy.
The first procedure following the diagnosis, which came in April 2019, was a port surgery, in which a tube was inserted into Emily’s chest that would allow doctors to administer intravenous treatment and draw blood more easily.
Emily started chemotherapy shortly after –– at that point almost five months pregnant.
Her whole life had now shifted from being busy with school, work and caring for a toddler to being busy with medical appointments every month and ER visits. At the same time, the bills were already starting to pile up.
Her medical bills alone, the stuff not covered by insurance, came to over $100 a month –– not to mention insurance copays, rent and the rest of the cost of living.
Due to her illness, Emily quit her job at DICC the same week she received the diagnosis.
“I went to go pick up a prescription from Kinney’s and I had no money… it was like a dollar to pick it up, and I was 10 cents short and it was raining out. I’m feeling terrible, digging through my seats and my daughter is screaming in the back seat,” Emily said. “I’m like, ‘This is America.’ I need 10 cents to pick up a prescription and I can’t pick it up without it. I’m in tears, and I’m sick and it was one of the most helpless and hopeless moments. I finally found change under my seats.”
Emily said that she had tried looking into programs that could lighten her financial burden but without being able to work and without any real support from her family, her options were limited.
“I do find that there isn’t any financial help for those who suffer from cancer. In my experience, there was no special services, I couldn’t get help with my childcare –– you can only get help with childcare through DSS is you’re working –– I even called preventative services to be like, ‘listen, I’m a good mom, I can take care of my kids, but my problem is that I’m sick,” Emily said.
While Emily’s life was changing drastically, she was still trying to provide some sense of normalcy for her then 2-year-old daughter, Penelope.
One day, shortly after her diagnosis, as Ithaca finally started to thaw, Emily took her daughter to the park.
“I took her to the park after I got my port put in and I was just so weak and so tired and I was like, ‘I just want some normalcy here.’ That’s the hard part, not being the mom I was before,” Emily said. “She’s used to a mom that can take her to the playground, she’s used to a mom that can chase her –– I’ll tell you, chasing a child when your body is feeling so shot from chemotherapy is the hardest thing.”
Emily’s daughter Penelope, who turned 3 this month, was one of the only sources of support in her home throughout the treatment and her pregnancy. She remembers trips to the ER with her toddler, and throwing up and crying in her shower at home.
“I remember one day I was coughing, I was about to throw up, and feeling awful and she said, ‘You OK?’ That became her sentence, ‘You OK?’ for months,” Emily said. “Anytime I’d make any sound, or say, ‘Ow,’ she’d be like ‘You OK?’ She still does it to this day.”
Reluctant as she was to ask for help, Emily at this point had started posting in a Facebook group called Mama’s Comfort Camp, asking for emotional support. In fact, she had posted in the group practically since the very beginning, looking for moms who might be able to offer her a kind word and a virtual shoulder to cry on. This group would become essential for Emily as her journey wore on.
Ithaca Mama’s Comfort Camp (MCC), a Facebook group for moms whose mission is to, “normalize the struggles of motherhood, facilitate the asking (and receiving) of help, amplify the influence of parents on policymaking, and improve well-being by fostering self-care and a culture of kindness.”
Mama’s Comfort Camp was founded in 2012, by Ithaca mom Yael Saar following her experience with postpartum depression. The group has since grown to become a nonprofit project of Cornell University’s Center for Transformative Action. They now host two groups –– one for mamas around the world and one for local Ithaca-area moms.
“I started doing this work in a way that was centered around postpartum depression, and I started hosting support meetings in town, and I wrote a blog and I also at some point started a Facebook group,” Saar said. “It became clear very quickly that our subject was not postpartum depression and rather our subject is the health and wellness of moms.”
Emily originally posted in the group asking for positivity following her doctor’s visit for pneumonia back in the Spring. People who saw her posts and were following her progress ended up sending more than just positivity, but have helped Emily both financially and by offering deep personal connection when she most needed it.
One of the moms Emily has connected with most is Stephy Scaglione, who also happens to be one of the moderators of MCC. She’s familiar with the emotional toll of dealing with a serious medical diagnosis while juggling all that life can throw at you.
“I had a liver abnormality called Sphincter of Oddi malformation, that took 6 years, five hospitals and over 50 doctors to diagnose and rebuild me. While I still have an autoimmune disease, I will live. But that time of being told I was going to die, 15 to 20 year old me learned a lot about life,” Scaglione said. “I really try to take out the fear and add hope to people stuck in the diagnostic phase of an illness. I know a lot of strong mamas who are going through some very scary and weird medical journeys.”
Emily refers to Scaglione as her saving grace. “She has offered me compassion, empathy, a space to just be sad if I have to, and an endless amount of encouragement,” Emily said.
Scaglione joined MCC early on, after connecting with the founder, Yael Saar in real life. She was hesitant to join at first, scared of admitting she may have been dealing with her own postpartum depression, but after she and her partner lost their second pregnancy, she joined and hasn’t looked back.
“It’s a really awesome thing, having a community helping mothers out, because this is a really scary experience for some of us,” Scaglione said.
Emily is really grateful to all the moms who stepped up to help her when she was in need, preparing meals for her, giving her rides and donating baby clothes — a big help for a single mom.
The experience has left Emily feeling that, when she gets better, she should try and return the favor for others that may be struggling.
“Not necessarily with cancer, but anything,” said Emily.
Her other big supporters, she said, were the oncology and ER nurses that comforted and cared for her along the way.
“I went to the ER probably 20 times. There was a point where I was going at least once a week,” Emily said. “I remember this one nurse telling me, ‘It’s OK. If you don’t feel right, come here.’”
That’s one of the takeaways that Emily has about the whole experience –– sometimes you have to be your own advocate. She has fears of what would’ve happened had she not be assertive in her belief that something wasn’t right.
“They don’t always know how you’re really feeling. And sometimes it’s hard to express that.”
In the midst of chemotherapy, Emily had a healthy baby boy, Phoenix, on June 30. The pregnancy had its challenges, and Phoenix was born two months early. But, Emily said he’s growing and doing well today.
Emily had her last round of chemotherapy in early August and she graduated from radiation in October.
It will be another month at least until she finds out if she’s cancer-free.
Today, and now on the back end of the treatment, Emily said her daughter is starting to better understand that things have changed, and she’s OK with it.
“Somebody sent me a book about a mother that doesn’t have hair, she’s on chemo, and it kind of explains to her why mom doesn’t have hair, why mom’s on chemo, why she’s laying on the couch, why mom is so tired and can’t take you to the park. I read it to her often and she gets it I think,” Emily said. “It’s called Nowhere Hair.”
Things are looking up in terms of health for Emily, but there is still a constant financial strain, and the cancer has taken its toll in the form of a weakened immune system and chronic illness following intense chemotherapy.
She has most recently been diagnosed with Fibromyalgia, a disorder characterized by widespread muscle pain accompanied by fatigue, sleep, memory and mood issues.
Emily has returned, slowly, to her job at DICC. She’s working just a few hours a day. Her financial situation has worsened –– at the time of this article being written, Emily has lost her health insurance and is struggling to pay back tuition money she owes. She loves working with kids and was studying social work online.
“Truthfully, I love the kids I work with and they’ve been really amazing, they really have, every day they ask to see my hair to see how long it’s gotten, but probably if I had the funds I probably would stay out of work until I was well because I’m really weak. Sometimes people don’t have a choice,” she said.
Prior to working at the Downtown Children’s Center, Emily has worked at the Southern Tier AIDs Program and the Rescue Mission.
“It’s really important that we are really positive, uplifting, compassionate, empathetic adults towards children, so they can become adults that are healthy. Mentally, physically, emotionally,” she said. “I worked with so many adults that were so broken, and it was really sad and overwhelming, so I really see the importance of taking care of little ones and little minds.”
Emily Dilger, despite all she’s been through, has persevered for the sake of her own little ones.
“The thing is that people are always like, ‘I don’t know how you do it.’ People ask me that all the time,” she said. “I don’t even think like that. There’s no choice when you’re faced with a certain situation you have no choice but to do it. I’ve been sick, I can barely walk, I’ve been throwing up all night, but I still have to take care of my kids.”
Above all, she’s thankful for the unlikely digital community of caring mothers that gathered around her in her time of need.
If you are interested in donating to Emily, there is a GoFundMe set up that goes directly to her.
You can find the Ithaca Mama’s Comfort Camp page here.